CurePSP https://www.psp.org Unlocking the Screts of Brain Disease Wed, 10 Aug 2022 20:27:42 +0000 en-US hourly 1 https://wordpress.org/?v=5.8.2 https://www.psp.org/wp-content/uploads/2016/04/cropped-favicon-32x32.png CurePSP https://www.psp.org 32 32 For Carepartners, No Moment is More Important Than the Present https://www.psp.org/for-carepartners-no-moment-is-more-important-than-the-present/ Wed, 10 Aug 2022 14:56:11 +0000 https://www.psp.org/?p=13389 When Rafi Stern was a kid, the grass oval in the middle of the Stuyvesant Town apartment village was strictly off-limits. He and his mother, Suzanne Wasserman, a woman who elevated so much of New York City’s landscape, had always pondered what it would be like to touch that exclusive grass. That is until one …

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When Rafi Stern was a kid, the grass oval in the middle of the Stuyvesant Town apartment village was strictly off-limits. He and his mother, Suzanne Wasserman, a woman who elevated so much of New York City’s landscape, had always pondered what it would be like to touch that exclusive grass. That is until one day years later, while Rafi was taking care of Wasserman in her StuyTown apartment, the two decided that they wanted some fresh air — fresh air in one particular spot. They went out onto the oval and laid in the grass, soaking up the sun and enjoying each other’s company.

“There are a lot of things that you can’t enjoy about being a caregiver,” Rafi said. “But when I look back at it there are things that I really treasure that I probably wasn’t appreciating at the time.”

Rafi was flung into a caregiver role in his mid-twenties after Wasserman began showing PSP symptoms that eventually led to a diagnosis, forcing him and his father to patch together full-time care just as he was scheduled to begin law school at Cornell. That began a stretch of two years split between two places: Monday to Wednesday at Ithaca and Thursday to Sunday at home. He says that juggling those responsibilities in addition to scheduling full-time caregivers was extremely demanding, but also oddly straightforward.

“I felt like I was running a home care agency at certain points,” Rafi said. “I compartmentalized a lot but I kind of look back on it fondly because I felt very ‘in-the-moment’ in everything I was doing.”

Balancing his role as a caregiver in addition to being a student and son left Rafi with hardly any time to reflect on his experience. But now he doesn’t shy away from the realities of being a caregiver, or dealing with supposed friends and family that alienated themselves following the PSP diagnosis. He speaks candidly of conversations that he had with his dad about being caretakers for another decade, which they both would have done without question but would have also taken an incalculable toll on them. There’s no way to know how someone will respond to a traumatic event, and Rafi has taken solace in what Dr. Gilbert from NYU Langone Medical Center told him 6 years ago.

“She said that some family members can’t even look at people that are this ill,” Rafi said. “That always made me feel good: I might not be doing a perfect job but I can hug my mom and be close to her.”

While there were core family members that helped in indispensable ways, Rafi emphasizes that he was not looking for unpaid help from anyone, rather thoughtful gestures that showed that people cared. He speaks fondly of the visits from his law school friends and trips with family members to unseen NYC landmarks.

“I always understood that people had very busy lives,” Rafi said. “But I think it’s the little things.”

Rafi also tried to limit their time at home as much as possible: his mom had always loved singing but had been too embarrassed to try it seriously; after the diagnosis she began taking lessons at Third Street Music School that she looked forward to religiously. She also took chair yoga and dance classes that Rafi partook in as well.

Rafi never expected the whirlwind of a journey that he would be thrust into, and looking back on it now he encourages caregivers to be gentle on themselves, seek help to not get burnt out, and most importantly, take time to sit in the grass.

 

 

 

 

“As much as you want it to not be the reality of your life in the moment, probably everyone who’s a caregiver looks back on it as the most meaningful time in their life — and I certainly do.”

 

 

 

 

 

 

 


Join us on August 29th for a conversation and Q&A with Rafi on his journey.

Register here

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Through the generosity of the Light of Day Foundation, CurePSP has received a matching grant of $50,000! https://www.psp.org/through-the-generosity-of-the-light-of-day-foundation-curepsp-has-received-a-matching-grant-of-50000/ Wed, 03 Aug 2022 23:08:19 +0000 https://www.psp.org/?p=13379 Every dollar you give towards the Hope Tour will be doubled! Donate Now For more than a decade, CurePSP and the Light of Day Foundation have partnered in a matching gifts appeal that has raised over $1 million dollars for our cause. Our partnership takes another step forward with the return of The Hope Tour, …

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Every dollar you give towards the Hope Tour will be doubled!



For more than a decade, CurePSP and the Light of Day Foundation have partnered in a matching gifts appeal that has raised over $1 million dollars for our cause. Our partnership takes another step forward with the return of The Hope Tour, a campaign that recognizes Light of Day’s brilliant concerts that both entertain music fans and serve as an engine to raise money to fight prime of life neurodegeneration. 

The Hope Tour is a series of strategic initiatives in care, education, and research that will benefit many thousands of families. Light of Day’s relationship with CurePSP began in 1998 when co-founder and executive director Tony Pallagrosi’s mother was diagnosed with PSP.  Tony remembers the struggle of finding a physician who could identify the condition that gripped his mother; it was that struggle that inspired Tony to partner with CurePSP, who provided them with information, resources and support, and in 2013 they created the first matching grant campaign named in honor of Dolores Pallagrosi.  

What began as a single concert in New Jersey in 2000 has grown into over seventy shows in thirteen countries on three continents including North America, Europe and Australia! Performers at Light of Day have included Bruce Springsteen (numerous appearances), Michael J. Fox, John Rzeznik (Goo Goo Dolls), Darlene Love, and more. These unforgettable fundraising experiences support CurePSP’s extensive and integrated models of care, consciousness, and cure.  

The Hope Tour recognizes the stellar contributions of our donors—those who generously support CurePSP and many others who have given to the Light of Day Foundation. Every dollar you give up to $50,000 will be generously matched toward this effort! We’ve always exceeded our goal in the past, and we expect that you will help to take us over the top this year. We can’t wait to share the progress that your generosity creates! 

With your help, The Hope Tour will: 

  • Provide essential assistance and advocacy for patients and families who are dealing with these diseases. 
  • Educate physicians to enable earlier diagnosis and better care. 
  • Support research to help scientists find treatment and cure. 
  • Provide HOPE for patients, HOPE for caregivers, HOPE for families, and HOPE for researchers in their battle against neurodegeneration. 

Because of you, we have HOPE! 

 

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Dr. John Steele, Fondly Remembered https://www.psp.org/dr-john-steele-fondly-remembered/ Fri, 22 Jul 2022 19:42:28 +0000 https://www.psp.org/?p=13284 By Lawrence I. Golbe, MD Chief Clinical Officer, CurePSP The PSP community mourns the passing of neurologist John C. Steele, MD on May 21, 2022, surrounded by his children in Bali, Indonesia, his most recent home. He was 87. Dr. Steele was one of the physicians at the University of Toronto who in 1963 and …

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By Lawrence I. Golbe, MD Chief Clinical Officer, CurePSP

The PSP community mourns the passing of neurologist John C. Steele, MD on May 21, 2022, surrounded by his children in Bali, Indonesia, his most recent home. He was 87.

Dr. Steele was one of the physicians at the University of Toronto who in 1963 and 1964 published the defining clinical and pathologic descriptions of PSP. The eponym, “Steele-Richardson-Olszewski syndrome” predominated in the medical literature for decades and is still used by some writers to honor the accomplishment. At the time, Dr. Steele was a neurology resident, Dr. J.C. Richardson was his mentor and department chief, and Dr. Jerzy Olszewski was a neuropathologist. Their 1964 paper in Archives of Neurology remains today the most frequently cited article on PSP not just for its primacy, but also for the thoroughness of its clinical and pathologic details.

Son and grandson of physicians, Dr. Steele was born in 1934. He earned undergraduate and medical degrees at the University of Toronto and completed a neurology residency at Toronto General Hospital in 1965. He married Margaret Porter, an artist and writer who authored a children’s book on PSP. Dr. Steele is survived by children Alex, Erica and Julia and grandchildren Jonathan, Sophia and Sean.

After his training, Dr. Steele won the prestigious McLachlan Fellowship, allowing him to pursue studies in Britain and France for two years. From that point on, his career was unconventional. He spent a year practicing and teaching in Thailand, returning in 1968 to the University of Toronto as a pediatric neurologist. In 1972, he moved to the Pacific, where he would spend the rest of his life.

He first worked as a general physician on the remote atoll of Majuro in the Marshall Islands doing everything from delivering babies to removing fishhooks, sailing on small freighters to deliver medical care on even more remote atolls. After six years in Majuro, Dr. Steele spent a year at the London School of Hygiene and Tropical Medicine for fellowship training in clinical tropical medicine. He then moved to the island of Pohnpei in the Eastern Caroline Islands, where he trained local doctors and nurses under a clinical appointment on the faculty at the University of Hawaii Medical School. From Pohnpei he also continued his work of practicing medicine in remote islands.

In 1982 he settled on the island of Guam as the neurologist at the US Navy’s base hospital and medical director of the local VA clinic. On Guam and nearby islands Dr. Steele cared for and studied individuals with a neurodegenerative disorder endemic to the indigenous Chamorro people. It was called lytico-bodig or the ALS-parkinsonism-dementia complex (PDC). Over the years, Dr. Steele invited and hosted multiple scientists to study this geographically and ethnically specific disorder. He spoke at numerous international medical and epidemiological conferences to create interest in PDC among researchers. Perhaps his most famous scientific guest on Guam was Dr. Oliver Sacks, whose 1997 book “The Island of the Colorblind” features a detailed portrait of Dr. Steele and his work. (The title refers not to Guam, but to the atoll of Pingelap, 1,000 miles east, where a different disease is endemic.)

Despite the lack of formal research facilities on Guam, Dr. Steele found ways to collaborate with other scientists in state-of-the-art inquiries into the cause of PDC. His warm relationship with the community as a local physician provided access to information on traditional practices, helping to elucidate risk factors for the development of the disease. He assisted in constructing detailed family trees to couple with modern molecular genetics performed by collaborators. Those relied on Dr. Steele’s having accomplished the difficult and delicate task of securing consent for blood samples and brain autopsies. Those studies ultimately showed that mutations in genes previously known as risk factors for other neurodegenerative diseases are over-represented in the PDC population but do not fully explain its cause. This raises the possibility of as-yet-unsuspected genes or of toxic or infectious contributors.

Dr. Steele’s insights into the Chamorro’s dietary habits helped form the hypothesis that PDC was caused by a toxin in the fruit of a cycad tree, the “false sago palm,” by consuming fruit bats (“flying foxes”) that eat the fruit and bioconcentrate its toxins. One such toxin, beta-Methylamino-L-alanine (BMAA), is produced by cyanobacteria in the trees’ roots. The toxic mechanism of this amino acid remains unclear but may rely on its mis-incorporation into proteins in place of serine, thereby encouraging misfolding of the resulting protein. Another compound in the same fruit, beta-D-glucoside, acts as an excitotoxin at glutamate receptors, another mechanism known to cause brain degeneration.

Favoring the fruit bat hypothesis is the observation that PDC has slowly disappeared over the decades since World War II, as traditional dietary practices gave way to Westernization of the Chamorros’ lifestyles. Dr. Steele’s indefatigable work with the Chamorro population was instrumental in this idea, which today remains one of the leading non-genetic hypotheses explaining PDC.

A major inspiration for Dr. Steele in his work on Guam was the similarity between PDC and PSP. In 1963, during his neurology residency in Toronto, his department hosted visiting lecturer Dr. Asao Hirano, a leading neuropathologist who had studied PDC in the 1950s. At that visit, Dr. Hirano examined the brain specimens from the original PSP patients and was struck by the similarity with PDC. Twenty years later, soon after arriving on Guam, Dr. Steele saw a similarity of the impaired downward eye movement and other outward features in the two diseases. Although PSP occurs world-wide and differs from PDC in important molecular details, Dr. Steele recognized that their similarities could prove key. He approached the puzzle of PDC by continually probing the rapidly accumulating knowledge of PSP and by collating the theories and data of a wide array of specialists. As he pointed out many times, the comparative study of PSP and PDC may shed light not only on those two disorders, but also on all neurodegenerative diseases. He framed his life’s work and scientific aspirations in that way.

Few of us can claim to have set so worthy a goal or to have accomplished as much in its service.

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Andy Maus Assumes Board Chair Ready for Progress https://www.psp.org/andy-maus-assumes-board-chair-ready-for-progress/ Mon, 18 Jul 2022 14:58:52 +0000 https://www.psp.org/?p=13208 Andy Maus knows that great systems aren’t built overnight. As the head of the Compass One Healthcare human resources department he oversees human resources for more than 2400 hospitals and integrated healthcare systems in 48 states. Maus says that optimizing the patient experience has guided the mission at Compass One, and as the newest Board …

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Andy Maus knows that great systems aren’t built overnight. As the head of the Compass One Healthcare human resources department he oversees human resources for more than 2400 hospitals and integrated healthcare systems in 48 states. Maus says that optimizing the patient experience has guided the mission at Compass One, and as the newest Board Chair of CurePSP, he hopes to continue raising awareness, building community, and ultimately finding a cure for those suffering from PSP, CBD, and MSA.

“At Compass One, we’re trying to help in the healing process,” Maus said. “We want to make sure all employees are communicating with patients to make sure we’re meeting their needs.”

Maus was first introduced to progressive supranuclear palsy (PSP) through his wife’s side of the family, as her late mother, grandmother and aunt all had the disease. That left Maus scared for his wife and their kids, and he wanted to contribute any way he could in confronting the disease. He started getting involved with CurePSP in 2019, supporting personnel needs before becoming a board member in February 2020.

“I just want to do whatever I can to fight this disease,” Maus said. “In my mind one of the best ways I can do that is to provide leadership and support for the organization spending every minute trying to figure that out.”

Maus succeeds Bill McFarland, who served as the Board Chair for seven years. He sees the Board Chair as the “conduit and collaborator” between the board and staff, a channel that facilitates communication between the two bodies to ensure that the organization’s goals are met. One of the first items on his agenda is to partner with Kristophe Diaz, Executive Director and Chief Science Officer, and the board on shaping the strategic direction for the next three years along with a blueprint for achieving those long term goals. 

“At CurePSP, we want to refresh our long term strategy to make sure it aligns at all levels and meets the needs of the people we’re serving.” Maus said.

By optimizing the patient advocacy and support, Maus seeks to inspire hope in everyone involved with CurePSP. He has always believed in the prospects of a cure, and wants to share that passion with the public. There is no time to waste, and Maus plans on turning that hope into tangible progress through fundraising and better care.

“A lot of the increased funding I want to put towards research and working with our key partners like Rainwater Foundation and others to help advance what they’re trying to do,” Maus said. “It’s enhancing what we’re already doing well but also doubling down on exciting fields like research.”

Maus’ own experiences have added an increased sense of urgency for understanding the genetic and hereditary components of these diseases, and he credits his enthusiasm to the continued progress shown in uncovering those scientific secrets.

“If you’re a part of this organization you’ll see a lot of advancement, and that’s rewarding,” Maus said. “The more people that we can get into the profession and advance the causes that we’re all trying to achieve is huge.”

As the newest leader of the CurePSP board, Maus is ready to spread the hope that he knows exists.

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Diane Deaver Keeps it Moving Through her Quilts and Poetry https://www.psp.org/diane-deaver-keeps-it-moving-through-her-quilts-and-poetry/ Wed, 29 Jun 2022 14:53:43 +0000 https://www.psp.org/?p=13136 After being released from an emergency room in Alaska, Diane Deaver needed to pick up her Bell’s Palsy medication. She asked her son-in-law to make one stop before the pharmacy: the post office. She needed to mail her quilt, which she had worked tirelessly on while visiting her daughter and son-in-law in Alaska, back home …

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After being released from an emergency room in Alaska, Diane Deaver needed to pick up her Bell’s Palsy medication. She asked her son-in-law to make one stop before the pharmacy: the post office. She needed to mail her quilt, which she had worked tirelessly on while visiting her daughter and son-in-law in Alaska, back home to her husband Doug in Santa Cruz so that he could submit it in the upcoming quilt show.

“You and I think of an all-nighter as being a term paper,” Doug said. “Diane thinks of it as a quilt show.”

After first learning how to quilt by taking a class in the Philippines, Diane honed her craft and produced over 100 hand-made quilts. They take longer to make than machine quilts, but Diane prefers hand quilting. For many years Diane belonged to a small quilt group and a quilt guild where she developed many valued friendships and won several awards. She was forced to retire from quilting following her progressive supranuclear palsy (PSP) diagnosis in 2018, but maintains her creative spark through poetry, where she hopes to inspire others and document the exuberant spirit that still lives inside of her.

“I hope that it can make people with PSP and other diseases feel less alone by showing what it’s like to suffer these changes in my life,” Diane said.

Prior to her diagnosis she had begun writing a book of family memories that she would leave to her children and grandchildren, memoirs that shifted to poetry after her diagnosis. The stream of consciousness form comes easier to her, and helps her produce a more consistent output of work. Not to mention that she had already won a 2016 Valentine’s Day poetry contest in the local Aptos Times newspaper for a poem about Doug. One of her favorite poems is “Special Folks.”

Diane keeps a blank notebook so that she can jot down any thoughts that might come to her. Family gatherings, old friends, and recent activities are all preserved through Diane’s poetry, reminders of the many wonderful experiences that the Deaver’s have shared. Writing has also become a remedy for Diane’s PSP symptoms, specifically insomnia, which is more frequent in PSP than other neurodegenerative disorders. On restless nights, Diane fills her mind with positive thoughts like poetry to cleanse the distractions.

“Sometimes while lying in bed I write a poem in my head and then try to memorize it so I can dictate it to Doug first thing in the morning,” Diane said.

Diane’s commitment to these mental exercises have helped preserve her radiant spirit, and she also credits a clinical trial at UC San Francisco (UCSF) for slowing the disease’s progression. She’s been participating in the clinical trial since 2021, which includes 18 pills per day, speech, occupational, and physical therapy, as well as a visit to UCSF every three months for routine testing.

“It changes everybody’s life,” Doug said. “It creates a change in your life that you have to adjust to.”

They both admit that the journey has been a learning process, specifically in finding the right equipment for the house. Diane says that the CurePSP monthly patient support group has been a huge help in navigating the challenges by getting suggestions from others who have had the same experience. Connecting with others has been an invaluable resource throughout the process. Neither Diane nor Doug could have envisioned this future when Diane first had balancing issues four years ago which led to seeing a neurologist who made the diagnosis. They have managed to turn their gratitude into a garden, watering it with cherished memories and healthy practices to maintain a natural glow.

“I try to focus on my blessings,” Diane said. “Even though it’s a terrible situation sometimes, I’m really grateful that I have Doug to take care of me and that we have the resources for things like caregivers so he can also get some relief.”

One positive outcome is that they see their daughters and family more often, including numerous visits from friends and relatives. Despite her PSP symptoms, Diane is still doing everything she can to stay active, and her poetry is just one way of sharing that.

 

To see all of Diane’s poetry and quilts, check out her website here.

And for more information on assistive devices and adaptive equipment, click here.

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The AMULET study: A clinical research study for people living with MSA https://www.psp.org/the-amulet-study-a-clinical-research-study-for-people-living-with-msa/ Mon, 13 Jun 2022 18:04:52 +0000 https://www.psp.org/?p=12949 To MSA patients and carepartners: at CurePSP, we work hard to follow developments by the pharmaceutical companies around the world that are advancing cures and treatments for rare neurodegenerative diseases. We’re reaching out today to let you know that Lundbeck is starting to recruit for a phase II clinical trial to evaluate the clinical safety, …

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To MSA patients and carepartners: at CurePSP, we work hard to follow developments by the pharmaceutical companies around the world that are advancing cures and treatments for rare neurodegenerative diseases. We’re reaching out today to let you know that Lundbeck is starting to recruit for a phase II clinical trial to evaluate the clinical safety, tolerability, and efficacy of a potential new treatment for those battling MSA. We encourage you to learn more about this effort. Below, you will find more information on the trial and a link to explore a dedicated website that Lundbeck developed to inform the community about this study”

The AMULET study aims to see if a study drug is safe and effective in slowing the disease progression in people living with multiple system atrophy (MSA).

An individual may qualify for the study if they:

  • Are 40 to 75 years of age
  • Have been diagnosed with MSA and it has been less than 5 years from the time of onset of MSA symptoms
  • Have a knowledgeable and reliable caregiver who will be available throughout the study when caregiver input is needed (approximately every three months)
  • Meet additional study criteria

There is no cost to participate in this study. Qualified individuals may receive the study drug free of charge and will not be charged for any study-related procedures. Qualified individuals may also receive the placebo. Any reasonable travel or transportation costs (fuel, bus or railway tickets) will be reimbursed. Food costs will be reimbursed for qualified individuals that travel more than 4 hours to a clinical research study site.

To learn more about the clinical research study and to see if you may qualify, please visit our website at amulet.researchstudytrial.com.

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CurePSP Centers of Care Lean on Each Other to Improve Care of PSP, CBD and MSA https://www.psp.org/curepsp-centers-of-care-lean-on-each-other-to-improve-care-of-psp-cbd-and-msa/ Tue, 31 May 2022 12:09:21 +0000 https://www.psp.org/?p=12858 When Dr. Miriam Sklerov first had the idea for a CurePSP Center of Care at the University of North Carolina Medical Center, she didn’t know where to start. Fortunately for Sklerov, an Assistant Professor of Neurology at UNC, she could take inspiration from the blueprint laid out by her colleague and the medical director of …

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When Dr. Miriam Sklerov first had the idea for a CurePSP Center of Care at the University of North Carolina Medical Center, she didn’t know where to start. Fortunately for Sklerov, an Assistant Professor of Neurology at UNC, she could take inspiration from the blueprint laid out by her colleague and the medical director of the UNC Movement Disorders Center, Dr. Nina Browner, who had spent many years building their Parkinson’s Foundation Center of Excellence. UNC already offered support groups, educational programs and research for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). Motivated by the new designation from CurePSP, she started a specialty interdisciplinary clinic for people with PSP, CBD and MSA. Today, CurePSP Centers of Care are building on the flagship program, creating new and stronger opportunities for centers to share ideas and resources to make care and support as accessible as possible for patients.

“It’s such a wide open field right now for these diseases,” Sklerov said. “We have an obligation to create that framework and mentor whoever needs help starting these networks.”

Those connections are happening through meetings like the one that took place on April 29, 2022, where CurePSP staff met with representatives from all 28 CurePSP Centers of Care (26 in the United States and 2 in Canada) to reinforce the program’s goals and brainstorm ways for centers to collaborate and grow their network of resources. The CurePSP Centers of Care program, established in 2018, seeks to connect people diagnosed with PSP, CBD, and MSA to the best possible clinical care. The program is at the heart of CurePSP’s mission to raise awareness, build community, improve care and find a cure for PSP, CBD and MSA.

Every Center of Care is tasked with the difficult job of serving patients within a healthcare system that is not designed to comprehensively manage these rare neurological diseases. Given the complex care needs of PSP, CBD and MSA, it makes a multidisciplinary approach, where various experts work together as a team and with other Centers, a necessity. Dr. Jori Fleisher, an Associate Professor at Rush Medical College and CurePSP Center of Care Director, emphasizes palliative care, an integrated approach to treatment that listens to the patient’s needs and adjusts accordingly.

“Palliative care is about wrapping someone in comfort,” Fleisher said. “Until we have a cure, everything that we’re doing is symptom management and enhancing quality of life, and we should be focused on how we will be there with families on this journey.”

Fleisher says that PSP, CBD and MSA are too complicated for any one discipline to treat and support on their own, but when care is done holistically as a team, they become much more manageable. Offering specialized education and resources is central to the mission of the CurePSP Centers of Care program. It is the responsibility of the care team to educate patients and families about palliative care and all of the options available to them. The palliative care model first grew out of the cancer field and has only started to be applied to neurological conditions within the last 40 years, according to Fleisher. There is also the common misconception among providers and patients alike that palliative care is synonymous with hospice, and that hospice means giving up — stigmas that act as barriers to many people with chronic and progressive diseases from obtaining support of a palliative care team.

“You can be in hospice and get great care, and still be connected to the healthcare providers that have been seeing you throughout your journey,” Fleisher said. “Hospice, if anything, doesn’t mean giving up but adding extra layers of support, as well as only being a tiny fraction of the palliative care world.”

Looking ahead, Fleisher says that it is imperative to better educate physicians on palliative care, who have been undertrained on the topic, while also working with hospice specialists to teach them about these rare diseases that they do not regularly see, including how they differ from the more common Parkinson’s disease. Recognizing this, the April convening of the network focused on patient-centered care and discussing ways to work together to enhance the standard of care available for PSP, CBD and MSA. It doesn’t take long to realize that a multidisciplinary approach is the only way forward, and an idea agreed upon by the two CurePSP Center of Care Directors at the University of Utah. Dr. Paolo M. Moretti and Dr. ​​Guillaume Lamotte have been trying to build a network from scratch in a state with a low population density. Moretti’s CurePSP Center of Care application was accepted in 2019, but then the pandemic hit just as they were ramping up their services. Since then, Moretti and Lamotte have been working hard to grow their network and programs, and while they may not have as many resources as other institutions, Moretti takes pride in what he calls a “virtual multidisciplinary clinic,” where specialists in adjacent departments are just one call away.

“Virtual in the sense that we might be able to set up visits with all of the various specialists more efficiently because we are in contact with them,” Moretti said.

Lamotte combines his dual neurological subspecialities of movement and autonomic disorders in offering a dedicated MSA clinic as part of his CurePSP Center of Care. He has also embraced a collaborative approach, forging relationships with various specialists at the University of Utah such as urologists, gastroenterologists, physical therapists, and social workers to create a “referral pathway” for MSA patients in which they can get the care that they need in a timely manner from clinicians who have a good understanding of the disease.

“The strength of Utah is that we have the different specialties for all of these atypical parkinsonism syndromes,” Lamotte said.

The need and demand is certainly there, according to Moretti, who says that patients will drive as much as five hours, coming in from neighboring states. Moretti is motivated to build the CurePSP Center of Care at the University of Utah into something greater than it was before the pandemic. He has already begun by hiring a health educator as well as a center coordinator to further strengthen their support and care offerings. That process will draw upon the experience of other CurePSP Centers of Care like those led by Sklerov and Fleisher, whose templates incorporate support groups and neuro-palliative care clinics. The paper published by all Centers of Care directors in July 2021, titled “Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care,” is another place to start.

Dr. Antoine Duquette, a Neurologist and Assistant Clinical Professor at the University of Montreal, and Director of the CurePSP Center of Care, agrees that local initiatives are critical for support of PSP, CBD and MSA, along with clinical trials and the ultimate goal for these neurodegenerative diseases: a cure. Duquette, who took multidisciplinary inspiration from an atypical parkinsonism clinic at the University of Montreal, looks forward to learning from other Centers of Care to explore models of care based around telehealth and local awareness that could provide unprecedented levels of healthcare accessibility to patients.   

“If there is a silver lining to the pandemic, it is how quickly people have adopted telehealth,” Duquette said. “While telehealth is not ideal for initial meetings with a patient, it certainly increases accessibility and promises to improve patient care.”

Perhaps increased awareness will accelerate discovery, which Duquette seems poised to be in the middle of.

“Building this community will help prepare and identify participants for clinical trials,” Duquette said. “Being a CurePSP Center of Care draws patients in and that will also be helpful for future research, so we’re very happy to be a part of this group.”

The CurePSP Center of Care meeting in April is just one important step in the exciting endeavor of strengthening the CurePSP Center of Care network. CurePSP announced a new Collaborative Advances in Research and Enhancing Support (CARES) grant of $80,000 available for Centers of Care, geared towards multi-center projects focused on innovative care delivery, outreach to underserved communities, and education of the medical community. Center of Care directors are eager for further collaboration between experts in the field and CurePSP, expanded care and resources available for PSP, CBD and MSA, and increased awareness of these diseases on a greater scale.

 

Explore all 28 Centers of care here

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CurePSP Elects Senior Healthcare Executive as Its Board Chair https://www.psp.org/curepsp-elects-senior-healthcare-executive-as-its-board-chair/ Wed, 25 May 2022 14:49:09 +0000 https://www.psp.org/?p=12849 Andy Maus will apply his personal and professional experience to advancing the foundation’s mission. NEW YORK, May 25, 2022  — CurePSP, the leading research and advocacy nonprofit organization for PSP, CBD, and MSA, has elected Andy Maus as the next chair of the nonprofit’s board of directors. Maus succeeds William R. (Bill) McFarland, who has …

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Andy Maus will apply his personal and professional experience to advancing the foundation’s mission.

NEW YORK, May 25, 2022  — CurePSP, the leading research and advocacy nonprofit organization for PSP, CBD, and MSA, has elected Andy Maus as the next chair of the nonprofit’s board of directors.

Maus succeeds William R. (Bill) McFarland, who has served as board chair since 2015. He will assume the office on July 1 and will work closely with CurePSP’s executive director and chief science officer, Kristophe Diaz, PhD, to advance CurePSP’s mission and strategic objectives. McFarland will remain as a member of the board.

Maus, 44, is senior vice president human resources at Compass Group’s Compass One Healthcare, an organization that serves more than 2,400 hospitals and integrated healthcare systems in 48 states. His connection with prime of life brain diseases is a personal one, with close family members who suffered from progressive supranuclear palsy (PSP), one of the three diseases for which CurePSP provides care, awareness, and research support. He has served on the board since 2019, in addition to the executive, personnel, finance, and strategic planning committees.

In accepting the appointment, Maus said, “I look forward to building on Bill’s success in growing the organization’s financial resources; allowing expansion of our commitment and mission to provide compassionate care and support to patients and families; increasing awareness around this group of difficult-to-diagnose and fatal brain diseases; and funding critical research. I’m committed to cultivating partnerships in the nonprofit and for-profit sectors where we can bring the voice of those diagnosed and their families and to jointly support core areas of our mission.”

Under McFarland’s leadership, CurePSP moved headquarters from Maryland to New York City, professionalized operations, built significant financial reserves, expanded the Centers of Care program to 28 leading institutions in the U.S. and Canada, increased seed funding for innovative research through the Venture Grants program, and recruited a new chief executive with a background in science and nonprofit leadership. CurePSP also expanded its national outreach through its support group network for patients and families, and extended funding for grants to families for professional in-home care.

“We are fortunate to have an executive of Andy’s stature assume this responsibility,” McFarland commented. “I’m confident he will build on the success we have already achieved and lead us into the future as an even more effective and relevant organization in the fight against neurodegeneration, one of the greatest healthcare challenges of the 21st century.”

About CurePSP

CurePSP is a 501(c)(3) nonprofit research and advocacy organization and the leading source of information and support for patients and their families, other caregivers, scientists, and healthcare professionals on progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). These three prime of life neurodegenerative diseases often strike during a person’s most productive and rewarding years. Since it was founded in 1990, CurePSP has funded more than 220 research studies and provided thousands of hours of support to those living with these challenging disorders. Currently, there is no treatment or cure for these diseases, which affect more than 100,000 people in the U.S. alone. CurePSP is based in New York City. Please visit www.curepsp.org for more information.

Contact:

Dr. Kristophe Diaz

Executive Director and Chief Science Officer

646-725-1453

Diaz@curepsp.org

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Ken’s Resilience: A Shared Ride for Hope and Support https://www.psp.org/kens-resilience-a-shared-ride-for-hope-and-support/ Tue, 26 Apr 2022 14:44:45 +0000 https://www.psp.org/?p=12328 When the snow finally melts in St. Alban’s, Vermont, it would take everything to stop Ken Appel from completing his 20-mile bike ride along the Missisquoi Valley Rail Trail. As he managed his PSP symptoms later in life, he had one question: “Am I going to be able to get on my bike?”  With the seasons …

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When the snow finally melts in St. Alban’s, Vermont, it would take everything to stop Ken Appel from completing his 20-mile bike ride along the Missisquoi Valley Rail Trail. As he managed his PSP symptoms later in life, he had one question: “Am I going to be able to get on my bike?” 

With the seasons changing again, Jan continues Ken’s legacy with the third consecutive Ken’s Ride fundraiser, taking place virtually throughout the month of May. Registration is open to all and even if you can’t ride along the Missisquoi Valley Rail Trail you can log the 26.3 miles at your own pace, posting your progress to receive donations with the top three fundraisers winning a special prize. 

Ken did not know a world outside of biking: he got his first bike when he was a young boy and Jan still has old letters that he sent his parents after he graduated law school detailing the new bikes he bought and his excitement for the new pieces. On family outings years later, Jan would have to pack up the car with the kids while Ken rode alongside them to Lake Champlain. Jan says Ken loved the freedom that biking afforded him within a daily routine. 

“He liked exercise but he wasn’t someone that could go to the gym or run with other people,” Jan said. “Riding a bike was a perfect match.” 

Jan still encourages participants of Ken’s Ride to complete the mileage any way they’d like, with the idea that even someone with PSP could participate. Similar to how later in life Ken rode the recumbent bike in his living room every day, tracking his time until he couldn’t, Jan wants people to do something that they love, stressing the importance of continuing such activities no matter the circumstances. 

“If you like to travel, then travel — even if it’s just around your neighborhood,” Jan said. “All you have is the moment you’re in it right this second.” 

Jan also hopes that promoting such accomplishments will lead to a greater awareness for these diseases as a whole. She says that Ken’s primary care physician had never treated anyone with PSP and that Vermont lacks sufficient resources for managing these conditions. And while these diseases lack a recognizable face like a Michael J. Fox or a Lou Gehrig to relate to, Jan wants people to know that those managing them are still a part of our communities, affecting neighbors who need our support. 

“PSP’s celebrity is every person,” Jan said. “When you have people in your community that suffer from these diseases it impacts us all. It’s taking something from your community when you don’t support people.” 

 

Sign up for Ken’s Ride here. And don’t forget to support your favorite participants for the chance to win prizes and raise money for hope!

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